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Mental Health First Aid Australia

www.mhfa.com.au
Caregivers of people with mental illness

A GUIDE FOR
Caregivers of people with mental illness

Mental illness can affect not only the life of the person with the illness, but also their close family, partners
and friends. Significant people in a person’s life are often a source of support with the illness.
However, family, partners and friends may be faced with a loved one’s mental illness without much
information on ways to deal with it and its impact on their life.

If you are a family member, partner or The information and suggestions in disorder, the more specific guidelines
friend who is 18 years or over and a this guide resulted from a study that may be more appropriate for you.
primary source of support for a person combined the latest research with the www.bipolarcaregivers.org
with mental illness, this guide was opinions and consensus of international
Not all of the information or suggestions
designed for you. It involves information panels of caregivers, people with bipolar
may be relevant to you. Mental illness
and suggestions about how you can disorder, clinicians and researchers, all
comes in many different forms. Caregiving
help a person with mental illness who with experience and expertise in dealing
experiences differ as well. Finding what
is 18 years or over (there are additional with bipolar disorder. (Berk L, et al.
works for you to deal with your situation
considerations when caring for children Development of guidelines for caregivers
can be a trial and error process.
and adolescents) and ways to cope with of people with bipolar disorder: a
the personal impact of the illness and to Delphi expert consensus study. Bipolar
take care of yourself. The information in Disorders 2011; 13: 556 - 70). The
this guide is most suitable for people who guidelines resulting from this study were
are caring for someone who has a mental analysed and the most general advice
illness which is severe, chronic, treatment was used to create this general guide. If
resistant or very recurrent. you are supporting a person with bipolar

This guide is NOT a replacement for medical advice and we strongly recommend that you or the person you care
for discuss issues related to treatment with a clinician. Although this guide is copyright, you can freely reproduce it
for non-profit purposes provided the text remains intact and the source is acknowledged. Enquiries should be sent
to Claire Kelly at mhfa@mhfa.com.au
1407_KJ
Caregivers of people with mental illness
Mental Health First Aid Australia www.mhfa.com.au

1: Know the illness 2: Treatment and 2.3. Complementary and


management alternative therapies and self-
In order to be an effective caregiver for help strategies
a person with a mental illness it helps to 2.1. Medication
be properly informed about the person’s There are a small number of
mental illness. This includes knowledge Not everyone with a mental illness complementary, alternative and self-help
about the symptoms, prevalence, risk requires medication, but for some, it will strategies which have demonstrated
factors and treatment options. become an important part of keeping effectiveness in treating mental illnesses.
well. Taking ongoing medication (even Different therapies have been shown to
Sources of information can include when the person is well) can help to be effective for different illnesses. Consult
talking to the clinician, reading good- prevent relapse, reduce hospitalisations reputable sources for information, such
quality, reputable websites and books. and suicide risk if the illness is episodic as the beyondblue “What Works” books
You can also learn a lot from memoirs and severe. Specific psychological (see link in chapter 1).
written by people with mental illness treatments, illness self-management
and their caregivers, but it’s important strategies and good support from Most therapies, such as self-help books
to remember that those stories are very caregivers and clinicians can also help based on cognitive behaviour therapy,
personal and individual, and may not people to keep well and enjoy life. have been shown to be most effective
reflect your experience with caregiving. when guided by a clinician. Others,
It is useful to learn what you can about such as exercise and massage therapy,
These guidelines can’t give you all the medications. For example, while some may enhance a person’s response to
information you need about mental medications begin to work quickly, treatment and improve mood symptoms.
illnesses, but we recommend the others take days or weeks to be effective.
following websites. Medications can have side effects. Some Many herbal supplements, naturopathic
of these go away when the person and homeopathic therapies exist which
Depression: have never been evaluated for safety
www.beyondblue.com.au gets used to taking the medication, or
respond to a change in dose, but others or effectiveness. These should not be
www.bluepages.anu.edu.au/ used without consulting with a clinician
are more serious and the person may
Anxiety disorders: need to change medications with the and should never be used to replace
www.crufad.com advice of their clinician if this happens. effective medications. If you are not sure
www.ecentreclinic.org whether a complementary or alternative
For more information about medications, treatment is safe or effective, seek and
Schizophrenia: and what may happen if the person follow the advice of your clinician.
www.sane.org tries to stop taking medication without
advice, see section 4.1. 2.4. Reducing triggers of illness
Bipolar disorder: and making lifestyle adjustments
www.blackdoginstitute.org.au 2.2. Psychological treatment
‘Triggers’ are ‘stressors’ that increase
Eating disorders: Psychological treatments can be effective the risk that the person will develop
www.thebutterflyfoundation.org.au alone in managing mild to moderate symptoms. Recognising a trigger
Substance use disorders: mental illnesses, but are generally not provides the opportunity for the person
www.adf.org.au sufficient to treat a severe or complex to put supports in place to avoid illness.
condition. This is particularly true in
the case of psychotic disorders, where Common triggers include stressful life
medication is required to treat the events, both positive (e.g. the birth of a
For additional information about these baby or a work promotion) and negative
mental disorders, and many other, see positive symptoms.
ones (such as ending a relationship or
the National Institutes on Mental Health The main psychological treatments losing a job), conflicts and interpersonal
website: www.nimh.nih.gov that have shown benefit are cognitive stress, and the use of alcohol and other
behaviour therapy, interpersonal therapy drugs.
and family therapies. Many other
psychological treatments are available To keep well the person may need to
and may be of benefit depending on the make some adjustments to their lifestyle
individual concerned and the needs of and goals. The extent of this adjustment
the family and other caregivers. can differ from person to person. It
usually takes time for the person to
make these changes and work out how
to live well with the illness.

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2.5. Developing a good support 3: Supporting the person person is severely ill or there is a risk
system when they are ill to their wellbeing or that of others, they
need emergency assistance (see ‘Dealing
Many people with mental illness Caregivers differ in how much and what with a crisis’ section 3.2). Encourage the
recommend developing good support type of support they provide (e.g. some person to focus on getting well as their
networks. These networks usually help only when there is an emergency, primary goal.
include family members and friends for while others also assist the person to
companionship and to help with the try to prevent relapse). The type and Helping to monitor the illness
illness when necessary. A clinician with severity of the illness will influence what Keep in contact with the person and
whom the person has a good relationship support the person needs. There are observe, listen and tactfully enquire
is essential. The support system may also lots of things you can do to help, but about how they are. In this way you can
include more distant acquaintances you need to work out what suits you, assist with monitoring the symptoms to
such as a neighbour (for example to pick the person and your caregiving situation see if they are becoming worse.
children up from school or collect mail (see ‘Considering how involved to be
when the person is in hospital) or work Helping if the person needs to go to
in helping the person with their illness’
colleagues who are supportive. Peer hospital
section 7.1). Below are suggestions for
support or mutual support groups can supporting the person in the different Some episodes are more severe than
provide opportunities to communicate phases and severities of illness. The next others. While many people can be
with like-minded people. chapter focuses on ways to help the treated at home, sometimes people with
person prevent relapse and enjoy life. severe mental illness need to be treated
in hospital for a short time.
3.1. Helping when an episode
occurs Hospitalisation may be recommended if:
• There is a crisis, such as the person
There are helpful ways to communicate
is severely ill and their functioning is
with the person and support them when
very impaired or they are in danger
an episode occurs.
of doing something with damaging or
Communicating calmly life threatening consequences (see
Recognising a When the person is ill, it is best not to ‘Dealing with a crisis’ section 3.3).
communicate with them in emotional • Treatment and support does not
trigger provides or loud ways (e.g. by shouting or very
emotional expressions of concern). Keep
seem to help their symptoms.
• Changes to their treatment require
the opportunity for in mind that the person is ill and try not
to react impulsively to what the person
close supervision of medical staff.
• They need to address alcohol or
the person to put
says or does (e.g. if the person is irritable
drug problems.
try not to respond in the same way).
• The person has symptoms that have
supports in place Being supportive does not mean you
have to agree with what the person says
a disruptive effect on their life, and
they need time out to focus on
to avoid illness.
when they are ill. You can acknowledge getting well.
that what they say is very real to them
(e.g. “I know you are convinced that you If the person has severe symptoms and
should quit your job, but I am not so is finding it hard to function, encourage
sure”). Validating the feeling behind what them to talk to their clinician or
they say can be supportive (e.g. “I can mental health team about whether
see you are feeling fed up with your job hospitalisation may be helpful. In some
right now, but maybe you need to wait countries there are halfway houses,
until you are a bit less upset about things which offer a peaceful and contained
before making a decision to quit”). environment for people who are not too
severely ill.This may also be an option for
Supporting the person to access the person to discuss with their clinician.
treatment
If the person’s clinician recommends
Encourage the person to contact their
hospitalisation, encourage the person
clinician or mental health team if they
to seek voluntary admission to hospital
have not already done so. You can offer
rather than to be admitted against their
to assist them to access treatment. If the
will. Discuss with the person that going

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to hospital may be an opportunity Get help 3.3. Planning for times when the
to take time off to get well, away If you think that things may be reaching person is severely ill
from stressful demands. In extreme a crisis point, call the person’s clinician When the person is relatively well, you
situations involuntary hospitalisation or mental health team and express can make plans with them about what
may sometimes be recommended (see your concerns (if the person does not to do if they become severely ill. Making
‘Planning for times when the person is call them). Do not hesitate to call the plans in advance can help you to feel
severely ill’ section 3.4). mental health crisis team, clinician or an more prepared. You can help the person
If the person is admitted to hospital, you ambulance if a crisis occurs. If the person to be treated in ways they would prefer
can: urgently needs to be restrained to stop to be treated when they are severely
them from harming themselves or ill by planning things in advance. This
• If necessary, provide information
others, you might need to call the police. is a type of advance directive. When
to assist with treatment (e.g. about
If you are in danger, consider your own the person is relatively well consider
the person’s recent symptoms or
safety first and then get medical help for discussing:
medications).
the person.
• Tailor your contact with them to Who to contact in a crisis
what the person is comfortable with, If you do not get the help you expect from
Find out who the person would prefer
as the person may feel vulnerable these emergency services, be persistent
you to contact if they become severely
about social contact. and contact another clinician or take
ill and you need to access treatment on
the person to a hospital emergency
• Take time to rest while the person is their behalf. There may be local service
department. Sometimes caregivers find
being cared for in hospital. options to assist the person in a crisis (e.g.
that emergency health services are not
mental health crisis team, ambulance).
3.2. Dealing with a crisis available or able to assist them in a crisis,
You might also need to enquire if certain
and they need to care for the severely
• If the person is suicidal, see “Mental emergency services will assist a person
ill person at home. If you are caring for
Health First Aid Guidelines for who is very ill, but not in immediate
a seriously ill person at home, make
suicidal thoughts and behaviours.” danger of harming themselves or others.
sure you have the necessary support
• If the person is engaging in non- If you live in a remote area where there
(e.g. from clinicians, appropriate family
suicidal self-injury, see “Mental are no local emergency services, find out
and friends). In a crisis don’t be afraid
Health First Aid Guidelines for non- where you can get help if you need it
to ask for assistance to prevent negative
suicidal self-injury.” urgently. If the person has established
consequences.
a good relationship with a particular
• If the person is experiencing severe
It might be worth finding out about clinician over time, this clinician may be
psychosis, or is psychotic and
helplines in your area that assist people helpful in a crisis.
becoming aggressive, see “Mental
or their family or friends in a crisis, as
Health First Aid Guidelines for When and how to act on their behalf
these helplines can be a valuable source
severe psychosis.” You might need to discuss when to
of support. Counsellors are usually
• If the person is using alcohol or other trained to listen and assist people to deal intervene on the person’s behalf (e.g.
drugs and becomes aggressive, see with crises and they may offer referral when certain specific symptoms or
“Mental Health First Aid Guidelines to appropriate services. Your local behaviour is present). If necessary,
for developing problem alcohol telephone directory will have numbers discuss Power of Attorney agreements
use” or “Mental Health First Aid of helplines in your area. to arrange for yourself or others to make
Guidelines for developing problem urgent decisions on the person’s behalf,
drug use”. Communicate clearly and calmly temporarily and in specific situations.
In a crisis communicate with the
What information to provide
person clearly and calmly. It is also not
a good idea to give the person lots of Based on their previous experience the
instructions. Don’t argue, criticise or person may prefer certain treatments
behave in a threatening way towards over others. Ask the person about
them. If appropriate, give the person information that you may need to
choices to reassure them that they have provide to clinicians or hospitals (e.g.
some control over the situation (e.g. If information about the history of
you are trying to distract them from their illness and treatment, and about
risky behaviour, you could ask “Should their health fund and social security).
we go for a walk or would you prefer to Reassure the person that you recognise
watch a movie?”). the sensitivity and confidentiality of this
information.

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What hospital or treatment centre the 3.4. Supporting the person after 3.5. Supporting the person with
person can go to an episode mild ongoing symptoms or
You might need to discuss what hospitals difficulty functioning
What people need after an episode of
will admit the person, as in certain places illness varies from person to person and Some people do not need or want
hospitals might only accept people with even between episodes. The person may support with their illness between
specific medical insurance or who have need time to get better, to get over the episodes. However, if the person has
been referred by affiliated doctors. If impact the episode had on their lives, mild ongoing symptoms or difficulty
there is a choice, the person may prefer and to resume their usual activities. You functioning they may welcome a little
a particular hospital or treatment. Make may need to adjust your expectations of appropriate support.
sure you have directions to the hospital the person.
in case you need them. Ask the person if they have consulted
There are a number of ways to support their clinician about ways to manage
Involuntary hospitalisation the person after an episode of illness. these symptoms or difficulties, or what
If the person has been severely ill in Consider the following suggestions: has worked in the past. Encourage the
the past, you may need to discuss with • The person may need rest, routine, person to keep to a basic routine that
them under what conditions to consider something to do, something to look includes regular sleep patterns and time
involuntary hospitalisation. It might be forward to and love and friendship. If for relaxation.
an idea to find out about involuntary you don’t know what they want or
hospitalisation procedures in case you need, ask, without being domineering
need to use them. Confirm with the or overindulgent.
person that actions that you have both
• Do things with the person rather
agreed upon about obtaining involuntary
than for them, to help to rebuild
hospital admission are acceptable to
their confidence.
them and will not damage your long-
term relationship. • Focus on wellness and positive

Focus on wellness
behaviour, rather than illness and
Who does what? problem behaviour.
If the person is usually temporarily
and positive
• Encourage the person not to try
unable to complete certain tasks when to get everything done at once, to
very ill, it may also be helpful to establish prioritise essential tasks and do less
who does what to share some of the
tasks. The person may be relieved to
stressful activities. If the person finds behaviour, rather
it hard to make a start on things,
know there is a plan in place to take care
of urgent responsibilities.
encourage them to set a small
manageable goal.
than illness and
• Offer assistance if the person has
difficulties with remembering things
problem behaviour.
or concentrating (e.g. assist the
person to remember appointments
by writing them down).

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4: Helping the person to effects. Discussing these concerns may medication may relieve symptoms that
keep well and enjoy life help to overcome them. the person finds particularly unpleasant
(e.g. agitation or racing thoughts). In
4.1. Supporting the person’s The person may also be forgetting to
this case you may also need to call the
medical treatment take medication. If this is the case, suggest
person’s clinician or mental health team
strategies that might help (e.g. using a
The extent to which you are involved and express your concerns.
pill organiser or taking medication at
with the person’s treatment is a personal the same time as doing another routine 4.2. Helping to reduce triggers
decision which will be influenced be the activity).
preferences of the person you are caring Although it is not possible to protect
for, their clinician, and yourself, and will If you are concerned that the person the person from all stress, you and the
also be affected by the severity of the has made a decision to stop or reduce a person you care for need to find ways
illness. Although you may need to take medication without discussing this with to manage stress, reduce triggers and
a more active role when the person their doctor, you need to address these maintain a lifestyle that helps them to
is ill, you shouldn’t take over from the concerns with the person.Ask them why keep well.
person in managing their medication for they have stopped their medications.
Identifying triggers
them. This can make you exhausted and Listen to their reasons and try to
understand their point of view. If needed, The first step is to get to know some
undermine the person’s confidence.
offer the person a different perspective. of the triggers that may affect the
You can also assist the person to For example, if the person is concerned person. It may help to have an idea of
monitor the effectiveness of the about stigma, reassure them that taking what commonly triggers symptoms (see
treatment or provide support if side charge and using medication to treat ‘Common triggers of symptoms’ section
effects occur. Telling the person if you an illness is nothing to be ashamed of. 2.4). Some triggers will be unique to the
see improvement in their symptoms Taking medication is an active coping person, so ask them what they think
since starting treatment can be useful strategy not a sign of weakness. triggers symptoms or makes them
feedback for them. Encourage the worse. Also think back to the person’s
person to take an active role in making Encourage the person to talk openly previous episodes, and work out if there
treatment decisions with their clinician about their medication with their were particular stressors that occurred
and too have regular appointments clinician. just before they became ill.
with their clinician to help monitor The clinician will be able to help to Lifestyle factors to encourage
their progress. If treatments are slow address any incorrect beliefs the person
to work, or the person needs to try You can support certain strategies the
has about medication. If the problem
new treatments, encourage them to person uses to reduce triggers and
is unpleasant side effects, the clinician
persevere and not give up hope. keep well. These might include regular
may help the person to try a different
sleep patterns, a sensible daily routine,
What if the person decides to stop or medication or look at ways to reduce or
a healthy diet and regular exercise. The
reduce their medication? eliminate those side effects.
person should reduce or avoid the
Sometimes, people stop taking their To make an informed choice, the use of alcohol or other drugs and find
medication, or do not take it regularly person may need to know that certain healthy ways to relax and unwind.
or at the required dose. This may have medications do not work as well when
Practical help
been a joint decision by the person and they are stopped and then started again.
Also, certain medications should be There might also be practical things
their doctor, in response to side effects
stopped gradually. If the person does you can do to help reduce triggers
or because the medicine is not effective.
want to stop their medication, they may such as cutting down the number of
However, there are other reasons also need to discuss how to stop with responsibilities the person has at home
why people stop or reduce their their doctor. when they are struggling with mild
medications. Some of these can indicate symptoms. The person may also benefit
a problem. For example, someone who If the person is well, ask them to from practical assistance if a stressful
is developing an episode of psychosis consider the pros and cons of taking event occurs. Offer to listen if the
may have lost insight and see no need medication, and what is at stake if they person needs to talk and they want to,
for medication, or someone who denies relapse. Negotiate an agreement with discuss options for solving any problems
they have a mental illness may be them to resume medication if signs of that are causing stress.
refusing more generally to take steps relapse appear.
Reducing conflict
to manage it. Sometimes people refuse If the person is currently unwell,
to take medication because they are Some people with mental illness are
suggest that they wait until they are
afraid of the stigma of mental illness and very sensitive to stressful interactions
well to make such important treatment
its treatment, or concerns about side (e.g. conflict or distressing criticism), and
decisions. Remind them that their
this can contribute to relapse. Mental

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illness can put a strain on relationships. normal and need to be distinguished from
If there is conflict in your relationship mood symptoms. Emotions that depend
with the person, it may help to find more on good or bad things occurring in
out about good communication skills the environment usually resolve quickly,
(see ‘Maintaining or rebuilding your causing minimal disruption to daily life.
relationship’ section 5.4), and ways to
It is important to keep an eye on mild
express grievances that are not hostile
ongoing symptoms between episodes, as
and can bring about positive change.
they increase the person’s risk of relapse.
In relationships it is also important to
But be careful not to constantly question
communicate about positive things;
everything the person says and does
not only about problems. However, do
for signs of illness, or it may be difficult
not blame yourself for the occasional
for them to enjoy the times when they
emotional outburst.
are well. Being very familiar with the
4.3. Helping to prevent relapse person’s pattern of illness may assist you
by recognising warning signs of to distinguish if something is a warning
illness sign or not.
Some people who experience recurrent Communicating with the person about
episodes of mental illness show their warning signs
consistent early warning signs over time. Talk to the person when they are well
However, they may not always be aware
of these changes. If you know the person’s
about how they would prefer you to
communicate when you have noticed Some people
warning signs, you may be able to help warning signs of illness so you are able
them to recognise when they occur and to handle this as tactfully as possible. who experience
to take steps to prevent relapse. If the Express your concerns in a way that is
person does not want assistance with
their warning signs, noticing when the
non-judgmental and unthreatening (e.g. recurrent episodes
“I have noticed that you have been a bit
signs occur can make it easier for you to
understand the person’s behaviour and
down lately”).
of mental illness
plan how to respond to it. Let them know what warning signs you

Research studies suggest that learning


have noticed as soon as possible. Ask the show consistent
person if they have also noticed these,
ways to recognise and respond to
warning signs may help reduce relapse.
and if they could be warning signs of
illness. If the behaviour you have noticed
early warning signs
There is some introductory information
below and community and health
occurred in a previous episode, remind
the person about this, and explain that over time.
services in your area may be able to this is the reason for your current
provide additional training. concern. If you are unsure whether
Knowing the person’s warning signs something is a warning sign, discuss this
with them. If the person is anxious about
To get to know the person’s typical
becoming ill, reassure them that they can
warning signs, first find out about
deal with the illness and that you are
warning signs that are common for a
available to support them.
lot of people, such as changes in sleep
and appetite. Ask the person if they are
aware of any warning signs themselves.
Think about the last time the person
was ill – what did you notice in the days
and weeks leading up to the episode? It
might help to write a list of warning signs
so you can refer back to them.
Identifying the person’s warning signs
when they occur
Be alert to changes in the person’s usual
behaviour and thinking. Remember,
though, that some variation in mood is

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4.4. Helping the person to gain Avoid focusing on the illness all the time 4.6. Stepping back to let the
confidence and live well Whenever possible, do things together person do more for themselves
Besides assisting the person with their that have nothing to do with the People can become used to caregiving
illness, you can support their efforts to illness and let them know that they are relationships. Some caregivers find
regain their confidence and make a good important to you. Try not to make the it hard to step back and adjust to the
life for themselves. illness the central topic of conversation person’s independence, even though
between you. Rather, relate to the they are happy that the person is
Supporting the person to live well with person as the friend, partner or close well. This ongoing caregiving can be
their illness relative they are. It can also be good for exhausting for you and make it difficult
People may go through a natural grief family relationships if the focus in the for the person to develop confidence in
process when coming to terms with family is not constantly on the person their own abilities.
their mental illness. They may deny and their illness.
If you think this may be occurring in your
the illness or experience a number of
4.5. Helping the person adjust situation, look at the benefits of being
different emotions such as sadness, anger
to wellness less involved in caregiving than you were
or shame. It can take time for people
before. Take time to relax and focus on
to adjust to the illness. ‘Recovery’ is a Being well can free the person to enjoy other aspects of your life, relationships,
term used to describe “a way of living life, however, some people find it hard to hobbies or work.
a satisfying, hopeful and contributing adjust to wellness. They may struggle to
life even with limitations caused by the take on new opportunities that become
illness”. Rather than being an end point available when they are well, or be
that the person achieves, ‘recovery’ may reluctant to engage in social activities. If
be an ongoing and very personal process the person seems well but still needs a lot
of finding ways to manage the illness and of help, be cautious about automatically
live well. assuming that they are finding it difficult
When the person is well, encourage to adjust to being well. They may have
them to do things they enjoy and that mild ongoing symptoms or ongoing
are not too stressful. Adjusting to the
illness may be easier for the person if
difficulties in daily functioning and find
it difficult to carry out their usual tasks
Whenever possible,
do things together
they set small manageable goals that (see section 3.5). However, if the person
involve their interests, talents, skills and is symptom free and able to do things,
but finds it hard to step out of the ‘sick
that have nothing
values. If the person needs to make
changes to their job or study plans in role’ consider:
order to keep well, take time to listen
to do with the
• Stepping back and encouraging the
and discuss alternatives, as this can be a person to do more for themselves.
challenging time for the person.
Rebuilding confidence
• Encouraging them to do things they
enjoy (e.g. visit friends or pursue a illness and let them
Sometimes the illness can dominate the
know that they are
hobby), both on their own and with
person’s life so that they forget their you.
strengths, and abilities. You can help to
rebuild confidence by encouraging the
• Reminding the person that although
they may have a lot to do, they don’t important to you
person to do manageable things, especially
have to do everything at once.
things that involve their strengths and
interests. When appropriate, mention • Asking the person when appropriate
things you appreciate about them.However, for help or a favour, so they can
be careful that this does not come across experience how good it is to be the
as condescending or patronising. person who is doing the giving.
When people manage to do things for • Discuss with the person how they
themselves they develop confidence feel about the changes and demands
and independence. What the person can involved in being well.
manage to do may depend on how ill or
well they are. Even when the person is
ill, they may still be able to do things for
themselves depending on the severity of
the illness.

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5: Taking care of yourself 5.1. Helpful coping strategies to control the illness can also lead to
frustration and disappointment.
Caregivers are at increased risk of Certain ways of coping are more helpful
becoming depressed and having other in reducing stress than others. Ways of Maintaining boundaries and setting
health problems. As a caregiver, you coping that may be helpful include: limits. Learn to say “no” to demands
need to take care of yourself as well as that are unreasonable or unmanageable.
Getting organised. Although it might
the person, or you might end up feeling Keep in mind that although you can help,
take a little time, getting organised will
overwhelmed and burnt out. Although the person needs to find ways to deal
probably save you time in the long run.
some caregivers report positive aspects with their own illness.
Prioritise what is essential to do and
of caregiving, this role can be very postpone or cancel other tasks. Arrange Acknowledge that you have needs too.
stressful at times. to share or delegate certain caregiving Use the time when the person is well
You might find that all your energy goes tasks and other demands. to focus on things that are important
into helping the person. However, if you to you, besides the illness. Devote some
Restore your energy. Making even a little
neglect your own health and wellbeing, time to doing things that you enjoy, and
time to do things that you find relaxing,
you may develop health problems. Also, maintain contact with friends and family.
or enjoyable may help to restore your
you can’t provide optimal support if energy. If the person is severely ill Developing your own support system.
your own health is compromised. There and cannot be left alone, arrange for There may be caregiver support
are some suggestions below about ways someone else to be with them or for organisations in your community or
to take care of yourself. respite care while you have a break. online. Having someone to talk to whom
Caregivers may also benefit from you can trust can make it easier to cope.
Get rid of unrealistic expectations.
counselling to assist with the changes Dealing with a loved one who has a Taking steps to sort out problems. A
and problems that sometimes arise mental illness can be stressful. If you try problem solving approach can be very
from caring for a person with mental to live up to unrealistic expectations of useful to deal with difficulties. See box
illness. Group information sessions or what you ‘should’ do as a caregiver you for an example of a problem-solving
‘psychoeducation’ for caregivers run might increase your stress levels and strategy.
by trained health professionals can be become exhausted and resentful. Also,
useful and help to reduce some of the having unrealistic expectations of what
stress involved in caregiving. the person and their clinician can do Problem solving steps

The 4 problem solving steps are:

1. Cleary define what the problem is 3. Develop a plan of action and follow the plan
To come to a clear understanding of the problem, without Decide what you need to do first to implement the solution
blaming yourself or others consider how it developed, when it you want to try and work out a step-by-step plan. Then put
occurs and why it is a problem. your plan into action.
2. Work out what solution or solutions to try by: 4. Review how the solution worked
1) Making a list of different ways to try to solve the Acknowledge the effort you have put into trying to manage the
problem: Use your imagination. Ask others if you like. problem and congratulate yourself if the solution worked. Many
It doesn’t matter how unrealistic the solutions are at problems require that you try different solutions before solving
this stage. them. If the solution was not helpful or there are still parts of
the problem that need to be solved, return to earlier steps
2) Evaluating each solution
to try other solutions. Sometimes people learn from trying to
• How practical or realistic is this solution in your solve a problem that there is another underlying problem that
circumstances? needs attention first.
• What are the possible risks and negative
Some problems are more difficult to solve than others. Difficult
consequences that may occur if you choose this
situations can take time to change or may not even be able to
solution?
be changed. If this is the case, find ways to make things a little
Are there ways to prevent or deal with these
easier and enjoyable for yourself, despite the situation.
consequences if they occur?
• What are the possible benefits if you choose this
solution?
3) Deciding which solution (or few solutions) you
would like to try.

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5.2. Caring about your health 5.3. Adapting to caregiving changed try to rebuild the relationship
(see ‘Maintaining or rebuilding your
Sometimes caregivers find that they Caregivers can experience a range of
relationship’ section 5.4).
don’t have time to consider their own understandable reactions when trying to
wellbeing. However, even small changes come to terms with the person’s illness At times you may feel like you want
are important when trying to develop and its consequences. There are things to withdraw from the person or leave
a healthier lifestyle. Rather than aiming that can make adjusting to the changes them. If this happens, don’t be critical of
to lead the perfect lifestyle, try to a little easier. yourself. It may be a feeling that passes.
incorporate small improvements such as You may be exhausted and need to take
Coming to terms with the illness
a little regular exercise, healthy balanced some time out for yourself.
meals and regular sleep. After the person’s first episode of
mental illness, caregivers may go through On the other hand, if you decide that
Don’t try to save time when you are a number of stages that are part of a you cannot continue in your current
busy by neglecting your own hygiene or natural grief process. These stages range situation and would like to leave or
health. Avoid negative coping strategies from initial shock, disbelief and emotional withdraw from your relationship with
such as drinking too much alcohol, turmoil, to gradual understanding, the person, you should first discuss
smoking or overeating. acceptance, and hope. The grief may what you are going through with the
return in times of difficulty. person. You may be able to find ways to
Reducing your own stress or depression
resolve some of the difficulties together.
Picking up signs that your emotional If you experience emotions linked to Speaking to a counsellor or relationship
health is deteriorating gives you the this natural grief process, allow yourself or family therapist can help.
opportunity to take timely action to to grieve. Remember that while the
keep well. If you notice signs of stress changes and losses connected to the 5.4. Maintaining or rebuilding
or depression, develop a plan for coping illness are real, people with the illness your relationship
(e.g. delegate more of your duties and and caregivers often find new meaning Mental illness can challenge relationships
take time off). and ways to enjoy life despite the illness. and sometimes it takes a bit of time,
Signs of depression include flat or sad Acknowledging your natural reactions patience and effort to maintain or rebuild
mood or loss of interest in things. Other and deciding how to deal with the them. Once the person is more well, it
symptoms include a lack of energy and situation may be possible to slowly regain some of
feeling tired, sleep difficulties, appetite the closeness you had previously.
You may experience a range of intense
changes, feelings of worthlessness and emotions in response to the person and To do this, start by sharing activities you
excessive guilt, and thoughts of death their illness. Some of these feelings may both enjoy. Begin to encourage giving and
or suicide. People who are depressed be part of the process of coming to terms taking in your relationship. For example,
may withdraw from social contact or be with the illness. Others may be reactions providing ask the person to start helping
very irritable in company.They can find it to your situation. Acknowledging these more and accept their support when
much harder to function at work or to natural reactions and deciding how to it is offered. Relationships that involve
complete daily tasks. If these symptoms deal with them can make it easier to cope. more give and take can be less stressful
persist for at least two weeks, don’t and more rewarding for both people. It
ignore them. Contact your doctor for If you are feeling angry, try to find a
is also important to communicate our
an assessment and to discuss treatment constructive release for your anger (e.g.
appreciation when the person does
options. go for a walk, play sport, paint, write in
something we appreciate. People are
a journal, or talk things through with
Some of the signs of stress include being also more likely to continue doing the
someone you trust). If you are angry
more irritable, short-tempered tense things that give them positive feedback.
about something the person has done,
or anxious than usual, having minor wait until you have calmed down to If the person is your partner and they
aches and pains or feeling run down and discuss the person’s behaviour with them. have lost interest in sex due to symptoms
becoming ill often. Delay discussing your angry feelings until of illness, offer companionship and allow
the person is well and more able to yourselves time to rebuild your intimate
deal with these issues (see ‘Using good relationship.
communication skills’ in section 5.4).
Using good communication skills
If you are feeling rejected, try to not There are ways of communicating with
to take hurtful talk and behaviour each other about grievances that are
personally. Do something you enjoy to constructive and are less likely to come
distract yourself from feeling sad or across as hostile or critical. These skills
rejected. If you are sad about the way take practice and time to learn.
your relationship with the person has
Practise active listening. People seldom

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take time to really listen to each other’s different solutions. Perhaps you could
point of view. Difficulties and conflict are do things their way this time if they
much easier to sort out once people agree to do things your way next time.
understand where the other person is If compromise is not possible you may
coming from. To actively listen you need need to agree to differ. Even people in
to look at the person when they talk and a good relationship sometimes need to
focus your attention on what they are agree to differ about certain issues.
saying. Acknowledge what you hear by
5.5. Recognising the positives
nodding, verbally indicating that you have
heard or asking them to continue and ask Some caregivers find positive things
for clarification to check that you have about caregiving, about the person and
understood their viewpoint. Summarise about themselves that make it a bit easier
what you have heard to check with the to cope with the person’s symptoms. For
person if your understanding of their example, caregivers sometimes report
viewpoint is correct, without adding that they have learnt from caregiving
personal opinions or judgments. to be more tolerant and empathic and
gained confidence in their ability to cope.
Using a positive request for change can
be useful if there is a specific behaviour Caregivers may also gain a new
that you would like to see the person appreciation of the person’s positive
change. This differs from criticism as it attributes, such as their creativity, their
is not about what the other person has abilities or talents, or their courage
done wrong. Instead, it is about what you in battling the illness. Some caregivers
would like to see change. When doing report that acknowledging the person’s
this, use ‘I’ statements. For example “I positive qualities helps them to deal with
would like your help with …” “It would the mental illness.
mean a lot to me if you would do...”
Finally, remember that caregivers often
Be specific without making too many
do not receive the recognition they
demands at once. Tell them how you
deserve. Acknowledge what you do and
think this could benefit yourself and
the efforts you make, and be kind to
where possible, the other person.
yourself.
Calmly express your feelings about the
person’s behaviour. When doing this,
address the specific behaviour that
is bothering you rather than globally
blaming the person. Use ‘I’ statements
and suggest what the person can do in
the future to prevent this from happening
Acknowledge what
again. If the person starts arguing, try not
to engage in the argument. If necessary,
you do and the
efforts you make,
simply restate your opinion and leave it
at that.
Work together to reach a compromise.
Sometimes conflict can develop into a
and be kind to
yourself.
struggle to ‘win’ the argument, leaving
people feeling unheard and angry. Avoid
this by working on resolving the conflict
together. There are several ways you
can do this. Spend some time separately
listing ways to sort out the problem
that suit you. Discuss these options
together and aim to find something that
is reasonably fair to both of you. If it is
hard to find a solution that is acceptable
to both of you, suggest a way to try out

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6: Taking care of yourself • If you are feeling very stressed during 7: Working with the
in specific challenging and after a crisis, talk to someone person to deal with the
situations you trust or contact a helpline. illness
Caregivers may find that it is helpful to • Schedule a bit of time to relax and People with mental illness differ in
think in advance about how they might unwind after the crisis, even if you what help they need and want from
deal with specific challenges, such as a are very busy. caregivers, and caregivers differ in what
pattern of more frequent relapse or Sometimes the effect of the crisis can support they are willing and able to
crisis situations. linger after it is over. Try to restore give. Caregivers also need to take into
your usual routine as soon as possible. account what support is realistic for
6.1. If the person is ill a lot of
If some time after the crisis you can’t them to provide (e.g. to consider their
the time
stop thinking about what happened, other commitments and their own
Some people have patterns of illness you feel distressed and unable to focus health). Some caregivers are unsure how
that are more severe. They may relapse on everyday tasks, consider getting involved they should be in supporting the
more frequently or their illness may be professional counselling. person. It can take time and a process of
more resistant to treatment. This can trial and error to find ways to help the
be very challenging. Don’t give up hope 6.3. If there is a lot of conflict person that suit both of you.
as getting well can be a slow process. between you and the person
Making agreements and plans together
Patterns of illness can change and there Mental illness can put a strain on and working as a team with the person
are things that may help to make it a relationships. However, not all problems and their clinician may help to reduce
little easier to cope. are caused by the illness. Stressful the impact of the illness on both of you.
If the person you are caring for is ill a interactions and conflict may be Talking with the person about the illness,
lot, find out what resources are available distressing for both you and the person. its management and how you can help
to support yourself, the person and the There are ways to try to improve may assist both of you to deal with it.
family.Try to keep to your usual routines communication and rebuild your
relationship with the person (see ‘Using People generally need more support
as much as you can and avoid isolating
good communication skills’ in section when they are more severely ill or in
yourself socially. If you are feeling
5.4). When trying to sort out problems crisis. At these times caregivers might
stressed, go easy on yourself – find ways
in relationships it can be useful to need to reach out to other people or
to give yourself a break, such as talking
consult a health professional who knows community services that can step in.
to someone you trust, watching a funny
movie, or going for a walk. a lot about the illness and counselling If a caregiver constantly intervenes
for relationships. in the person’s life, the person might
It might help to make some lifestyle
changes to cope with the person’s 6.4. If the person is ill, irritable experience this as intrusive, and refuse
persistent or recurring illness (e.g. and very critical of you to ask for help when they really need it.
Repeatedly telling the person what they
rethinking the household budget, It can be hard to maintain perspective if should be doing to manage their illness
adjusting your work hours or arranging the person who is ill is also very irritable might come across as nagging. Tell the
for others to take over more tasks). and criticises you a lot. Finding ways to person that you would like to help them
Suggest that the person gets a second detach and set boundaries without being to manage the illness, but do not want to
opinion from an expert clinician on other drawn into arguments can be helpful. be intrusive or get in the way. When the
ways to manage the illness. Ultimately, if
It may help to detach from the situation person is well, ask them if the support
you can’t change the situation, focus on
a little by reminding yourself that you have been providing is appropriate.
things that you can control.
the person is ill. Don’t try to defend It is not always necessary to mention
6.2. Reducing stress if a crisis yourself by arguing logically with the the illness when encouraging illness
occurs person. Address the specific comments management strategies (e.g. invite the
Caregivers can feel exhausted and or behaviour (e.g. shouting) that are person to go for a walk with you because
overwhelmed when going through unacceptable or concerning, without the dog needs walking, not because it
an illness-related crisis. Stress can be criticising or blaming the person as might help the person’s depression).
reduced if you prepare in advance for an individual. Say something like “I Also, keep in mind that not all support
times of crisis (see also ‘Dealing with a understand you’re upset but I’m not has to be described as such; sometimes
crisis’ section 3.3). going to tolerate being spoken to in this just sitting with the person can be
way,” and walk away. Don’t be drawn into supportive or you can provide practical
Ways to reduce stress in an illness reacting to their irritability or believing help or affection without discussing this
related crisis: the criticism. in advance.
• Reassure yourself that the crisis will
pass.

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7.1. Negotiating caregiver the person needs additional supportive person’s wellbeing. Even if they can’t
involvement contacts. You can’t always be perfectly talk to you about the person, you
consistent either - unpredictable can still share important information
It is best to discuss your involvement
demands and circumstances do occur. If with them.
when the person is relatively well. If
you cannot provide the usual support,
the person has only recently received a • In order to overcome restrictions
try to arrange with the person for a
diagnosis they may not be ready to accept on confidentiality, discuss with the
back-up support person or organisation
the illness or discuss its management. Invite person what information they would
to step in.
the person to share their views on what like the clinician to share with you
helps people to manage mental illness. It is not always possible to implement and under what circumstances (e.g.
Don’t feel obliged to use psychiatric exactly what is specified in a plan, but it if the person becomes very ill, or
jargon. Many families have their own can provide direction and a basis from information to assist in the person’s
ways of talking about the illness (e.g. which to work. You can have plans for ongoing care after discharge from
feeling really down or very high). dealing with different aspects of the hospital). Ask the person to let their
illness (e.g. a plan for dealing with suicide clinician know what you have agreed
You could ask the person what you can
risk and another for what to do when upon.
do to help in specific circumstances (e.g.
the person becomes depressed).
what you can do to help when the person • Consider developing ‘power of
struggles to get up in the morning when Sometimes people do not want to attorney’ agreements or advanced
they are becoming depressed, or how to discuss their illness or to make plans. directives to arrange what you can
assist them with their plans to prevent Even if the person does not want to do to help with urgent treatment or
relapse). There is a possibility that the discuss illness management, having your other decisions when the person is
person may not know what help they own plans can help you to be prepared. severely ill (see ‘Planning for times
need. If you have some ideas about how when the person is severely ill’
you could help, discuss these options section 3.4).
tactfully with the person. 7.2. Working with the person
• While the person is severely ill,
and their doctor
Through discussion with the person, try to keep in contact with their
you need to come to some agreement Some people with mental illness prefer treatment team.
about the nature and extent of your to manage their treatment with their
• When communicating with the
involvement. For example, you might clinician as independently as possible.
person’s clinician, don’t be afraid
agree that you will provide specific Others welcome the opportunity to
to ask questions, or to ask for
support when it is needed, and the form a team with their clinician and
clarification if the information
person will try to let you know if they caregiver to deal with certain aspects of
provided is confusing.
notice any of their warning signs or treatment. If you would like to play an
need help. Consider formalising the way active role in assisting the person with Even with good illness management,
you help into a plan. aspects of their treatment, here are relapse can and does occur. If this
some suggestions: happens and the person is disappointed,
When creating a plan:
• Discuss with the person the support them by:
• Keep your plans simple so they are
possibility of working with them • Listening if the person wants to
easy to follow.
and their clinician. If you would like discuss their disappointment.
• Consider writing your plans down to accompany the person to an
• Reassuring the person that they did
and keeping them in an easily appointment, offer to do so.
their best.
accessible place.
• Ask the person to let their clinician
• Suggesting that sometimes
• Review your plans as circumstances know that you are the primary
medications and other illness
change or you acquire new caregiver and your contact details in
management strategies need to be
information. case there is an emergency and the
adjusted.
clinician needs to contact you.
When making your plans, you need to
• Encouraging the person not to give
commit only to actions you feel you can • Find out about confidentiality laws
up hope, as finding what works to
be reasonably consistent in taking. For that may restrict clinicians from
manage the illness is a trial and error
example, don’t commit to being available being able to provide information
process.
for phone support at all times of the day and discuss their patient’s treatment
and night if you have to look after small with you.
children or can’t be contacted when
• Keep in mind that you do have the
you’re working. You might instead agree
option of contacting the clinician
that overnight or during business hours
if you are concerned about the

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7.3. When the person has an episode of psychosis they may have 8: Dealing with stigma,
difficulty with their illness lost insight and see no need for help, in discrimination and
management strategies which case you might need to seek help disclosure
for them anyway.
It can be difficult for the person to use Dealing with stigma or discrimination
strategies to prevent relapse or reduce If the person refuses to get their illness from others can be difficult and painful
symptoms because they may need to treated for both the person and the caregiver.
go against what their mood tells them Mental illness that is not treated and
to do. For example, it can be very hard managed can have a very negative impact Stigma involves stereotyped beliefs
to get out of bed and follow their usual on the person and their family. This is about the negative qualities of a particular
routine when they are feeling depressed especially true for severe mental illness. group (e.g. people with mental illness). A
and lacking in energy. person that is considered to belong to
Try to understand why they refuse. this group is automatically considered
If the person finds it difficult to use They may fear the stigma of mental to have the negative qualities connected
strategies that may help them to prevent illness, and you can talk about this. They with the group. These beliefs distort and
relapse you could: may have concerns about treatment, taint the person’s reputation and status.
• Encourage them to keep trying. particularly medication (e.g. they may Stigma can come from external sources
believe medication is addictive or that (e.g. the family, friends or community).
• Temporarily take a more active role
side effects will be intolerable) and these Sometimes, when people experience
in assisting the person (e.g. help
concerns could be discussed with an other people’s stigmatising attitudes,
them to do an activity when they are
expert. Assess how ill or well they are they start to believe them. They may
depressed by doing it together).
so you know how to respond to this see themselves as being less capable
• Support them behind the scenes (e.g. refusal. or worthy than others. This is called
maintain regular household routines self-stigma.
If the person who refuses treatment is
to reinforce the person’s routine).
unwell, or their symptoms are escalating, Discrimination occurs when these
If you have ideas about what might make you may need to seek help for them stigmatised beliefs are acted on and the
illness management strategies, tactfully against their wishes. Get urgent medical person is unfairly treated. Stigma can
discuss these with them. help in a crisis (see ‘Dealing with a crisis’ come from others or society in general,
section 3.3). If you have developed a plan or be part of your own beliefs. Dealing
7.4. Difficulties in working with
for such times, use it. with stigma and discrimination can be
the person to deal with the
illness If the person who refuses treatment difficult and painful for both the person
is relatively well, recognise that the and the caregiver.
It is not always easy to work together
decision to accept treatment is their Caregivers who are concerned about
to deal with the illness. Good
own to make. Be patient and supportive, stigma sometimes isolate themselves
communication skills can sometimes
and try to negotiate with them to get from social contact and become
help to sort out disagreement and
treatment if they develop symptoms. depressed. Consequently, they may miss
conflict (see ‘Using good communication
skills’ in section 5.4). You may also find Over time, the person may come to out on valuable sources of support and
that the person does not always want accept the importance of accepting or enjoyment.
your help or they may refuse to treat or seeking treatment. If they do not, you 8.1. Ways to deal with stigma
manage their illness. may need to try a new approach. Talk and discrimination
to the person about the way the illness
If the person does not want your help Become informed
is impacting their life, your life and the
You may find that the person does not lives of others, and how treatment could Most stigma is based on a lack of
always want your help. It may be that improve this. Ask them to consider information and understanding about
they are able to manage well without it, strategies to minimise the risk of the illness. Being well informed about
and this is fine.They prefer to work with relapse, for example, avoiding alcohol the illness can help you to recognise
someone else on their management and other drugs. You may also benefit and correct some of the misconceptions
strategies, in which case you should help from consulting a clinician yourself, or involved in stigma.
them to find the right person. speaking to someone else that you trust. Mix with people who accept the illness
However, it may be that they are
Many caregivers find it rewarding to
depressed and irritable and pushing you
attend a support group where they and
away, or isolating themselves. If this is the
the person they care for are accepted,
case, try to maintain contact and ensure
and mental illness is understood.
they can reach you if they decide they
need your help. If the person is having

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Think carefully before deciding to speak 8.2. Disclosing the illness or


out against stigma or discrimination your caregiving role
Some people believe that speaking The issue of disclosure can be a
out against stigma that results in sensitive one for people with mental
discrimination is always essential. illness and their close family and friends.
However, whether or not to speak out You and the person have a right to
against stigma or discrimination is a privacy. This means that you need to be
personal choice.What you decide might cautious about who you tell about the
differ depending on the circumstances. person’s illness or your own situation.
When you and the person you are However, keeping the person’s illness a
caring for are deciding whether to secret from close family and friends, due
speak out or not, consider how stressful to concerns about stigma, can eliminate
this may be, whether there may be potential sources of support and lead
negative repercussions, the likelihood to isolation.
that speaking out may change people’s
attitudes, and whether to disclose your It can be difficult to decide who to tell
own situation or just speak out against and what to say about the person’s
stigma generally. illness or your situation. Consider
who needs to know, and the positive
It is important to let the person decide and negative implications of sharing
how they would like to respond to the information. Consider as well how
stigma and discrimination from others. much information you wish to share,
Only encourage the person to take a and how.
stand against stigma and discrimination,
if this is not too stressful for them. If friends or relatives avoid you due to
stigma, develop other more supportive
If the person is experiencing a high relationships.
level of self-stigma, encourage them to
develop their abilities, interests, and a
sense of purpose, as this might increase
their self-confidence and resilience
to stigma. Peer support groups where
mental illness is accepted can provide
good buffers against stigma for those
affected. Remind the person that mental It is important
illness is like other recurrent health
conditions. to let the person
decide how they
would like to
respond to stigma
and discrimination
from others.

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